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Involve Australia – public involvement in genomic research

Home Our project areas Involvement & engagement Involve Australia – public involvement in…

Summary

Involve Australia has engaged with the public to develop community involvement guidelines for genomic researchers. The project partnered with patient support and advocacy groups, patients and carers, people who involve community in their research, interested members of the public, genomic researchers and healthcare professionals.

The project investigated the public and community involvement landscape in Australian healthcare research and used existing resources to aid the development of guidelines specifically for genomic research.

Unlike many guidelines, Involve Australia built its guidelines from the community member perspective. This allowed community members to highlight what they need if they are to continue to be involved in research. Ensuring their needs are built into genomic researchers’ involvement strategies before projects begin provides a standard for other fields of healthcare research. Ultimately, this will improve patients’ journeys towards better health.

 

https://www.australiangenomics.org.au/wp-content/uploads/2021/06/Involve-Australia_Involving-community-in-your-research.png

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Guidelines

Involve Australia’s Guidelines for Community Involvement in Genomic Research aim to provide genomic researchers in Australia with practical information for involving community members effectively and meaningfully in research projects. Genomic research brings with it complex ethical, legal and social implications, which benefits from the lens of lived experience to facilitate equitable and responsible implementation.

Download the Guidelines by clicking on the image below.

Download the Guidelines for Community Involvement in Genomic Research

 

Guidelines for Community Involvement in Genomic Research Guiding Questions for Researchers Consultation feedback report

The following organisations endorse and support the use of these guidelines when involving community members in research:

Mito Foundation logo
Rare Voices Australia logo
Science for All logo
Genetic Support Network Victoria
Murdoch Children's Research Institute logo
Childhood Dementia Initiative logo
JDRF logo
WEHI logo
Breast Cancer Network Australia logo
Research Australia logo
VCCC Alliance logo
Sanfilippo Children's Foundation logo
Association of Australian Medical Research Institutes logo
Rare Cancers Australia logo
Health Translation Queensland logo

Recommendations for institutes & funders

These recommendations aim to provide health and medical research institutes and funders with guidance on how to improve their community involvement processes, and support researchers and community to work collaboratively in a more effective and inclusive way.

Recommendations for funders Recommendations for institutes

Honoraria policy

This policy provides researchers with community member payment rates based on their level of involvement and tasks undertaken. We encourage other researchers to use and adapt this policy for their own projects.

Australian Genomics community member honorarium policy

Project Leads

Monica Ferrie

Genetic Support Network Victoria

Anne McKenzie, Telethon Kids Institute

Anne McKenzie AM

Consultant Consumer Advocate &
Telethon Kids Institute

Sean Murray

Mito Foundation

Project Coordinators

Keri Finlay, Involve Australia Coordinator

Keri Finlay

Contact 

keri.finlay@mcri.edu.au

Isabella Sherburn, Project Officer, Involve Australia

Isabella Sherburn

Contact

isabella.sherburn@mcri.edu.au


More projects

International engagement

Genomics acceptability – societal preferences, public opinion and analysis

Communities of practice

Connect with us

(03) 9936 6345
info@australiangenomics.org.au
50 Flemington Road, Parkville
Victoria 3052 Australia

In the spirit of reconciliation Australian Genomics acknowledges the Traditional Custodians of country throughout Australia and their connections to land, sea and community. We pay our respect to their elders past and present and extend that respect to all Aboriginal and Torres Strait Islander peoples today.

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